When you gradually lose your sight, you literally don’t see it coming. Like the way dusk creeps around day; wrapping itself around stealthily; filling the corners, before infiltrating the periphery; total darkness. It was light once and now dark. And although my central vision is okay, it might be that one day it isn’t.
Only you know how blind you are. Nobody knows and truly understands what you can see and by extension, what you can do. This means that the words ‘partially sighted’, ‘severely sighted’ and ‘blind’ mean a lot of people second guess you and write you off.
This is both soul destroying and difficult to navigate, in an already blurred world! But, as you lose your sight, your confidence ebbs away and it leaves you wondering if people are right? Should you let them right you off?
Not bloody likely!
The blind community, as well as most people living with disability and hidden illnesses, are bright and resilient. We work really to hard to continue to live the best lives possible. We don’t think about our limitations, but rather find ways to broaden our horizons (no mean feat for somebody with peripheral vision!). We want to experience life, be successful, and look good too! But, behind that determination and vigour we are faced with ignorance within the world. A world where people want to write you off and make you feel like a nuisance or burden. Which, on a wonky day, you feel you could quite easily subscribe to and quietly crawl away from your fight…
Luckily, the last few years of my journey have taught me many things. They’ve taught me that I’m a good person. That I’m resilient and worth more than I ever believed. I’ve grown in voice to articulate my ‘issues’ without feeling ashamed.
Sadly, I didn’t feel that way five years ago. I was dying inside and allowed negativity to breed in and around me. But, like I said, ‘luckily…’
What has made the difference?
- I’m learning that it’s okay to have a voice. To say ‘no’ and ‘wait up!’ and of course ‘I need this adapting’. I’ve also learnt that having a voice can make others uncomfortable and challenges their preconceptions – how great is that? Showing the world the blind community kick-ass.
- I work incredibly hard to plan everything I do. I can’t manage surprises very well (unless they are of the ‘im whisking you away to New York variety, which although would be tricky – I’d many some how!), so I write lists (on my inverted screen on my phone), plan each day, week, month to make sure my stress levels are kept low and my life calm. In fact, my logistics are so on point, I think I could run Ukraine’s military defence.
- I’m kind to myself. I used to be such a martyr and a worrier. And although I’ve ditched the former, the latter creeps in during times of tiredness and stress. However, being kind means I look after my mind and body because I’m worth it. To say that to myself a few years ago would have had me running for the hills. I’d see it as selfish. But now? I know that by looking after me, my family, friends, colleagues and students, get a better deal.
- It’s okay to make mistakes. Everybody struggles to say ‘well done’ and ‘you’re doing great’, but they are happy to say ‘you’ve made a mistake’. Rude feckers. I think it’s because it makes others feel better about themselves – especially those with an ego or competitive gene. However, my mistakes are because I’ve missed something, not because I’m stupid. I felt stupid for a long time, but to work full time in a pressurised job, with low vision means my brains not dead yet.
- Finally, I surround myself with good people. They bring sunshine into your life and warmth to your soul. Everything is possible when your wrapped in love. And I am truly humbled and grateful for everyone of you.
For many years, Living with sight-loss made me live in a perpetual state of panic. I allowed others to make me feel shame and inadequate. My determination not to let it define me meant that I ran from it until it crept up and got worse without me knowing.
Four years ago, I was having a breakdown and had no idea why? I was clueless. I honestly never realised how living constantly on the edge had tipped me over it! I had no idea my sight had got so bad – seriously! But now, in my calmer and freer world, I see that woman and my heart feels heavy for her. She’d have never thought to ask for help, to take time for herself – see didn’t feel she was worth it.
Yes, I still have hurdles to overcome. I have many issues and situations to navigate, but I’m not afraid of the dark any more. Being blind is my superpower and there’s a lot more to come.
Beautiful words Luce, you really are amazing 🏻
Love this blog. A good reminder to be kind to yourself and advocate for your needs. Being vulnerable makes us stronger. I think writing is also your superpower!